There’s definitely a wrong way to give an unexpected medical diagnosis.

In 2000 I was diagnosed with a benign brain tumor, a meningioma. I knew that the tumor would need to be removed, but I was shocked when the ophthalmologist declared: “I’m so glad that I’m not the neurosurgeon who’s going to operate. It’ll be tough; that sucker is sitting in the middle of your brain in a lake of blood.”

But while it’s easy to determine the wrong way for a doctor to give unexpected bad news, it’s surprisingly difficult to figure out the right way to give a specific diagnosis to a specific person. That’s what I thought when I read the account of the mother who was angry at her doctor for the way he handled her baby’s diagnosis of Down Syndrome.

I’m totally biased here: I think it’s a bit sad that we haven’t moved more towards essentially eradicating Down Syndrome.

Would faith or hope be a preemptive (I’m finer with them after the fact or in the face of greater degrees of uncertainty) excuse to bring a baby you know has pediatric cancer and will require massive amounts of care only to have a shortened and lessened life to term? Why does it count for cognitive disabilities? People with cancer aren’t lesser anymore than the cognitively disabled are, but it is is still a massively life-altering and arguably harming ‘thing’.

I understand that in a practical sense some people will want to carry a child to term no matter what. I also understand that there are amazing individuals with Down Syndrome out there. I’m not advocating some kind of cull of living individuals with any disability (and I hate the false comparison that always comes up requiring me to say that, despite the massive -duh-).

hmmm

Well the NYT also is publishing some amazingly terrible medical articles:

This is the kind of doctor who just cosigns whatever the patient wants. Amy is not from that school.

Wombat

Looking at it as an investigative area is a perfectly fine – even good – thing.

And writing about that for the right audience wouldn’t be bad.

Writing about it in the NYT is a bit of a different story.

/shrug. The concept is interesting to read about, poisoning the layperson well concerns aside.

But I’m someone who’s atypical presentation depression/possible other (we’re scraping back that top layer first for a clearer picture due to severity and immediate effects, but the possibility has absolutely been raised) isn’t super responsive to ADs (different gens, SNRI vs SSRI, etc, all eh to nada) and I was basically begging my psych to try -something- else. I brought up atypical antipsychotics because I’ve seen some limited research/anecdotal results especially with my again atypical presentation (hello hypersomnia my old friend) – it was a suggestion/question, not remotely a demand, though, We ended up elsewhere but it’s still off the beaten path.

The Computer Ate My Nym

Semi-off topic: You’re probably aware of sensory dysintegration is often a problem in autism and that it can lead to people with autism being very sensitive to certain things, i.e. specific sounds, colors, textures, etc.

I realized this morning that Trump’s skin tone is exactly a color that makes me want to scream and run away. (I don’t actually do so, only shudder and look away, but that’s my impulse.) It’s not about his policies, though they make me want to scream and run away too. But, for example, I like AfD blue as a color, I just don’t like the policies that go with it. But Trump orange…that’s awful to me in its own right.

Perhaps you have synaesthesia (“a neurological phenomenon in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway” – like seeing numbers as colours).

I don’t. But Trump’s skin tone still makes me shudder. His utterances make me shudder even more. And I live on the other side of the globe – that’s how far he reverberates.

The Computer Ate My Nym

I would have been livid if a provider had known that my baby had Down syndrome and did not tell me until after the birth or until too late for an abortion. I don’t know what I would have decided–probably to abort, but having not been in that situation I can’t say for sure–but I would have never forgiven them for taking that decision away from me.

Incidentally, I’m a “special needs adult”. I have asperger syndrome. The idea that, if there had been testing for AS my parents might have decided to abort me bothers me not at all. Their decision, not mine and if they had it would be distinctly not my problem right now. Their decisions after I was born and especially after I was conscious, those I feel justified in critiquing, but why should I care any more about the idea that they might have aborted the fetus that became me than that they might have decided to not have sex the night I was conceived and pre-me sperm might have been digested instead of going on to fuse with pre-me oocyte?

T.

Same.

If my parents had choosen to abort pre-me fetus, or whatever, it would not be my problem after all, because I wouldn’t exist to have any problem at all.

RMY

I wouldn’t be around the care if my parents had discovered and chosen to abort me for being gay. That being said, if they had only found out, and spent my entire childhood trying to “correct” it, that would’ve been complete hell.

Beatrix S.L

I have ulcerative colitis, and honestly I would abort if a fetus I was carrying would develop the same condition. Its horrible.

Spamamander

My issue was with getting the diagnosis post-partum. I suspect my providers knew about the possibility my daughter had DS- I had a second ultrasound to “measure nuchal fold thickness” which I now know can be a marker for Down syndrome. Nobody informed me of this. After she was born, the delivery room went pretty silent and I was given her for quite some time to nurse, which I think was an attempt to have me bond before they swept her off for tests (without informing us). We had no idea anything was going on until it seemed like it was taking a LONG time for them to bring her to me in the room and my ex and my mom went to the nursery… and she wasn’t there. The head pediatrician told both of them what was going on right there in the hallway. They then came to my room looking like they’d been hit with a hammer. He followed, announcing that she almost certainly had Down syndrome, she was getting evaluated by pediatric cardiologists from Children’s, the genetic test would be back in two weeks, and laying out every potential complication she could have. This was a military hospital and he had the bedside manner of a drill sergeant. I AM glad the potential issues weren’t completely sugar-coated, I would rather that than “everything will be fine and perfect and wonderful!” (Which is why I shredded the “Welcome to Holland” letter left on my bed later).

A physician needs to be realistic. And I highly suspect a mention of “you have the option to not continue the pregnancy, because there could be serious health complications to the baby that we can’t predict” can be misconstrued to some in that frightening time as “he told me to abort my baby!1!”.

Gene

I hate “Welcome to Holland”. It’s a perfect example of the “everything is awesome!” forced positivity DS families are supposed to portray.

Interesting. Somehow I always thought she had a daughter with DS and not a son. Nice to know he is doing well (and high functioning).

Irène Delse

It’s actually not a bad metaphor once you adjust for a more realistiic view.
“Holland is different. And it has tulips, and Rembrandts…” Yes. And an extensive systems of levees that have to be cared for continually lest the sea submerges the country. Welcome to a life you have to wrest from adversity.

Roadstergal

I just wince at “And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.” Comparing a severely disabled child to not going to your first pick of holiday destinations. It’s just… shithell, something seems very Privilege about all of it. Like a vacation to a different (very nice) place is the worst pain the readers would be expected to have gone through. Like there aren’t hard, for-real painful emotional and economic issues to navigate, and some situations where there will be no ‘good answer’.

That being said, I’m not a mom of a child with a substantial disability, so I defer to those with that experience.

Rhybellious

I have a child who is medically complex and had significant special needs. I loathe the whole Holland analogy. Holland is a first world country with socialized medicine and a reasonable social safety network. It’s the height of privilege to compare the disappointment of not getting your dream vacation to the profoundly life changing impact of a child with a disability. I wrote this essay a few years ago and while I think I could have written it better it does capture how more of how I feel about that little parable ( which I also believes shames parents for their feelings of rage frustration, and grief .). http://not-hothead-yet.livejournal.com/703116.html The journal isn’t mine, my friend was just nice enough to post it there for me

Amy Tuteur, MD

That’s incredible!

Rhybellious

Thank you!

BeatriceC

Wow. That brought me to tears. It’s such a perfect analogy. You described my life perfectly.

Rhybellious

Thank you, I appreciate hearing that!

Nick Sanders

I see it slightly differently. I’m upset because it talks about the pain from the “loss of a dream”. And completely ignores that the child is a person who is going to have their own difficulties in life. It reminds me of what is said here about natural birth fanatics: it’s all about the mother’s experience, the child is just a prop.

Box of Salt

Nick, I get what you’re saying (all about the mother’s experience), and I don’t like the “Welcome to Holland” piece either.

But please consider this: when she writes “the loss of that dream is a very very significant loss” that’s because it *is.* The dream isn’t about the parent; the dream is *for* the child. The child is not “a prop” or a status symbol; the child is potential.

The “loss of that dream” is about looking at other children developing normally, and realizing that those children are achieving things the same things that you yourself achieved as a child, yet your child will not. And, yes, that’s a significant loss that is mourned.

Nick Sanders

Not being a parent myself, I’ll trust your greater knowledge on the subject.

Box of Salt

Nick, this is my not-on-disqus upvote. Thank you for listening.

Spamamander

I call it the “Corky Syndrome”. The TV show “Life Goes On” was great in that it portrayed a family that happened to have a member with DS, but people think that everyone is like the character Corky, high functioning and seemingly happy all the time.

Bombshellrisa

Right now, there is a high functioning DS character on the UK show Coronation Street. He has a job, is witty and has lots of friends.

Sue

It’s difficult to understand how your providers didn’t explain the reasons for measuring nuchal fold thickness (Nuchal translucency scan) – this is a SPECIFIC screening test for predicting the probability of Down SYndrome.

Providers of pre-natal testing have an absolute responsibilty to obtain adequately informed consent prior to proceeding.

Spamamander

After I learned more (she was born in January 1996, so internet research was still mostly non-existent) I was horrified. IF they mentioned what they were looking for, I don’t recall it in the least. I hadn’t had an AFP test since I was only 23 and the false positives at the time didn’t warrant it. After the second ultrasound I was told nothing, not offered an amnio or followups. Military hospital so I really had no recourse. When I had my son in ’99 I was a high-risk pregnancy because of severe depression, but I didn’t have CVS testing because the type of translocation my daughter has placed me at low risk for another trisomy. At the 18 week u/s choroid plexus cysts were discovered and the OB stayed after the clinic closed to ensure my amnio was done that very day. Same hospital.

Elizabeth A

Very far OT….

I have spent the last 2 days with family, in the hospital with my dad, who has an advanced abdominal cancer, diagnosed just a few weeks ago. Wednesday morning, we thought we were losing him to sepsis, but he’s bounced back – in the last two days, his prognosis has gone from days to weeks to “maybe months, we can’t be sure.” All I can feel right now is exhausted.

Oh, and a screaming, incoherent rage for the visitor who (among other things) tried to “helpfully” adjust his nasogastric tube. I never want her to come back again. Please tell me I can refuse to let her in.

demodocus

*hugs* That’s tough. I should think that if you’re the one making decisions for your dad, then you probably could refuse to let her in.

Elizabeth A

My mom is mostly doing that, and was out of the room at key moments. We appear, however, to be on the same page.

You can refuse to let her in – especially if your dad has no interest in seeing her.

3boyz

I would personally not terminate a pregnancy for any reason other than my life or if God forbid the baby had anencephaly (or something comparable). I do undergo the NT during every pregnancy because a) the information could still be pertinent for care decisions made during delivery and in the days following and b) I would want to prepare both emotionally and practically. I would not be offended at the suggestion of termination because I understand the doctor has to discuss everything. I would not want to hear the doctor say the baby is “perfect”, I would want honest information about what I’m facing, especially regarding health risks. I would be offended though if the doctor continued to bring up abortion as a possibility even after I’ve already made it clear that’s not something I’m willing to consider. Also, my doctor during my first pregnancy introduced the NT as “so there’s this test we do for DS, which I assume you won’t want because you’re religious…” and I had to say excuse me, don’t make ASSumptions, I DO want the test! I thought that was inappropriate, he should have offered the test and then waited for me to decide whether to accept or decline.

Krista

Mostly a lurker here, but this one hits a bit closer. Our screening test came back as having a higher risk of DS, about 1%. We opted for a n amnio. The results were reassuring and our daughter is fine, but waiting for those results was pretty much the hardest 2 weeks of my life. I don’t know what we would have done with the results if they hadn’t gone the way they did. I spent those 2 weeks crying myself to sleep, and swinging wildly from one side to the other with regards to our options. I still don’t know and can only be grateful that I was spared that decision. I still don’t regret having the testing done and I would do it again in any future pregnancy.

Lilly de Lure

I know exactly how you feel, I’m pretty much going through the same thing right now as I’m 21 weeks + 2 and was given a 1 in 28 (or 3.6%) chance of Downs Syndrome – cried for 8 straight hours afterwards. I’m still glad I had the test and that the paediatrician who phoned me with the results was very matter of fact about the potential complications (and pointed me in the direction of reputable online resources which gave me more information), even though I knew going in (and still know) that there was no way I’d be ending this pregnancy due to a DS diagnosis.

Glad to hear your daughter is fine, I’m still keeping my fingers crossed for my son (I opted out of an amnio as I decided I didn’t want to run the additional miscarriage risk it entails so I’m waiting until he’s actually born to find out whether or not he’s actually fine – OH and I figured that the wait might be hard on us but wouldn’t harm our son so we went with it) but I’m glad I’m going through this armed with accurate medical information instead of sugar coating.

Krista

I really hope that everything goes well. I recall that there are also things that they can look for on the ultrasound that may be an indicator (though they can’t give you a firm answer). If it’s any comfort, I have a friend who went through the same thing, with similar odds, and their child also ended up being unaffected. Wishing you the best regardless of what happens.

Lilly de Lure

Thanks Krista, really appreciated! That’s the bit we cling to in many ways – my son’s anatomical results are those of a baby without Downs Syndrome (no sign of any markers on the 20 week scan – kidneys normal, no excess fluid, no balls of calcium around the heart and a femur length of 33mm). When we did his nuchal transparency test it came out at a very healthy 1.6mm (although the blood results were atrocious, hence the high risk result) and his nasal bone was very clearly visible (this later feature is not included in the risk calculation in the UK as it causes too many false positives when it isn’t seen (which it might not be for any number of reasons unrelated to DS)) so we’re hopefull that despite the chances we were quoted its very likely he does not have Downs Syndrome. However if he does we’ve as much of an idea as we can have in advance of what to expect and what to do (like a few people here I’ve had some experience of caring for adults with Downs Syndrome so I’m not going in blind) so we’re playing the waiting game with a fair amount of optimism.

Fjf

did you have the chromosomal fetal DNA test? If not, it might be worth looking into. I got a 1 in 100 result for DS with the standard screening test but didn’t want amino, so I had the Harmony test. It came back negative and the doctor was confident about the results, so it was a relief.

swbarnes2

It’s been mentioned here that commonly cited miscarriage rates for amnio might be a couple decades out of date. Might be worth it to look around, make sure that you are accurately informed as to what the rate is with modern techniques.

Lilly de Lure

Thanks swbarnes2 – I asked my OB about that as the figures that were being quoted at me seemed a bit all over the place and she gave me the most up to date ones for the UK, however I’ve got a few additional issues going on in my pregnancy which complicates things and raises the odds in my case so I decided not to risk it.

moto_librarian

I’m hoping for the best for you and your son, Lilly. I can’t imagine how hard it must be to wait. Thinking of you.

Lilly de Lure

Thanks moto_librarian!

MI Dawn

And this is how it should be. Offer the test. It’s the mom’s right to say yes or no. Then, it’s her right, once given the results, to decide where to go from there. It’s NOT the doctor’s right to belabor the termination step. Wanting to know so you can plan ahead is perfectly reasonable.

RMY

I had friends who were mad at the dr’s office had a miscommunication and the tests were done (as the information wouldn’t change how wanted the pregnancy was), until I pointed out that DS often has heart conditions that may want them to change what hospital they pick for delivery, then they were okay with it.

Deborah

OT : Finished your book the other day Dr Amy. Loved it! There are so many gems in there I’m going to read it through again more slowly this time. And all those wonderful references! What a great resource for midwives who are sitting on the fence, who know there’s something wrong with the ideological agenda in their profession but can’t put their finger on what it is: who want to push back but don’t quite know how or even what to push back against: who are too frightened to anyway for fear of backlash and ridicule from their birth warrior colleagues.
HEARTFELT THANKS 🙂

Amy Tuteur, MD

Thank you!!

FEDUP MD

I also would like to note her kid is just ONE year old. She is little and cute- so are all kids at that age. The question will be what will it be like in 40 years? Her child may be bigger than her, she will be elderly, and what if said child is nonverbal, self-harming, and/or violent? What if said child WAS fine but now is undergoing early dementia as is common with Trisomy 21? Not saying she might not still have made the same choice (I myself would not choose termination either) but I also work extensively with kids with developmental issues and many of them have many many issues as they get bigger and older. Saying everything is hunky dory at 15 months is like saying marathons aren’t so hard after you have run the first 500 yards…. downhill. Yes, these kids are loved, and yes, their lives have worth BUT she hasn’t gotten to the hard part yet- when they are no longer cute and everyone now is scared of them and you can’t just pick them up when they are having a tantrum because they weigh 250 pounds. When she will have to worry about her daughter being sexually abused because of her disability and trusting nature. When she will worry about what will happen to her daughter when she is gone. Acting like happy thoughts will fix all of these is not only unrealistic, but very unfair to her daughter going forward. It doesn’t set her kid up for her best possible life to pretend that everything will just be fine with the power of positive thinking.

Who?

I have nothing to add to this but thanks for saying it. No one knows how the story will play out but what you describe is reality for many people.

The road to hell is paved with good intentions.

Gene

I have a family member with Down Syndrome. Her mother is very vocal against the “positivity” aura that surrounds the syndrome. All those with DS are “wonderful” and “joyous” and “loving”. Any potential negatives (and they are LEGION) are quickly drowned out by the screaming hordes of the “positives”. You can’t ever complain about your relative with DS. It’s very isolating.

Similar to the Runway Paranoid Turnaround from The Devil Wears Prada. I can’t believe I’m linking the two, but the comparison is apt.

I have a colleague with a family member with Downs as well. She is very honest that while her sister certainly lives a life well worth living, there are significant challenges too. The two don’t cancel each other out, it’s not all or nothing.

Charybdis

I agree. My brother has Asperger’s, only diagnosed in the last 10 years (we are in our mid-late 40’s). He and I are 371 days apart in age and he is the elder of us. Growing up, there were all sorts of issues with him, as Mom and Dad were trying to find a diagnosis as to what the issue was. He had/has some characteristics of austism, but not all, some characteristics of Tourette’s, but not all, plus some anxiety and OCD traits as well. I knew (as I was outright told by Mom and Dad) from an early age (single digits) that I would become the caretaker/supervisor for my brother after they died. Nearly everything more or less revolved around my brother and his behavior/condition. My parents missed some things that were important to me (Brownie ceremony, school play in elementary school, award ceremonies, sports competitions, dance recitals, etc) because they had to deal with him and his doctor appointments, therapy sessions, school issues, medications, etc.

I really hate the sweetness and light that surrounds these type of issues; the joy, the specialness, the wonderful-ness, the loving “blessing” that these children are to “the entire family”. Babies and kids grow up to be adults, bigger, stronger and more difficult to manage/deal with. My brother has a college degree, works, lives with my mother (had been living with my parents until Dad died) and could be considered a success story, more or less. Hip, hip hooray.

He is as useless as tits on a bull, however, in stressful situations. After Dad had his stroke and was in the hospital, he was nowhere near the hospital to help take a shift to stay with Dad. Mom and I split up that duty, she did nights and I did days, while working at night/odd hours at my job, plus having a family of my own to deal with. After Dad died, he again was no help with planning the funeral, being present for arrangements and family stuff because it stressed him and he couldn’t, as Mom said, “handle it”. When Mom had an ER visit last month, he couldn’t/wouldn’t wait patiently for the breathing treatment to be finished so he could give her a ride home from the hospital, he left and she called me to take her home, because, again, he couldn’t/wouldn’t “handle it”.

He is why I had genetic testing (Fragile X as that seemed to be the going theory about him at the time) before I even began to think about getting pregnant. I grew up with a brother with “issues”, I was going to do my best to not parent one. It sounds really harsh, but that is the flip side of the “joyous blessing” positive hogwash that prevails about these conditions. It can be ugly, draining, unfair (I know nothing is really fair in life, but a lot of give and take and compromising was just not possible with my brother), and stressful for the entire family.

*braces for torches and pitchforks*

Gene

Most kids with dev delay have their challenges, but I swear that puberty just throws extra kindling with lighter fluid AND gasoline on the fire. I’ve mentioned to my relative’s mother that she should consider starting her on birth control. But “she’ll never have a boyfriend!” Urgh… She’s VERY VERY high functioning, in excellent physical health, lives in a group home, has a job. And the younger sibling knows that they are expected to care for her (financially, emotionally, physically) after the parent die.

Caring for a disabled child in incredibly hard. Sugar coating is not appropriate, ever.

slandy

My husband has Asperger’s and his frustration is that members of his family don’t expect him to contribute anything because they don’t think he can “handle” it. He’s basically a scapegoat for everything and his siblings barely acknowledge his existence, except to make themselves look good for having a brother on the autistic spectrum.

Basically, he hates that his family underestimates him. His mother and sister have even tried to insinuate that he is abusive to me and our children. Never mind, of course, that the same sister WAS abusive to her younger siblings when they were growing up.

But I realize that there is no two types of Asperger’s alike. I am truly sorry for what you went through.

J.B.

I have a kid with anxiety who may eventually have either an asd or adhd diagnosis and a husband with similar challenges-usually he copes better with 30 more years of maturity but when they both get going it is rough. They are who they are and are wonderful and bright (and are not struggling as much as your brother I think) but I wonder about how my other child sees it.

You get the child you get, and love them. It is hard too and there’s minimal support (75 percent of therapy out of pocket). Especially irritating when relatives blow off my concerns. I’m not making this up thanks!

Gatita

I’m in almost the same exact situation except with one child and it’s hard. So much time and money. I’m exceptionally lucky to have an extremely flexible job and good insurance . It’s still exhausting .

Charybdis

I wouldn’t characterize my brother as “struggling” per se; he is gainfully employed, carries his own insurance, drives, has friends, has both an Associate’s Degree and a Bachelor’s Degree, pays Mom rent, maintains his car, grocery shops, etc, handles all the regular minutiae of life fairly well. The social side of things, not so much.

He will vapor lock and become loud and obstinate if something sets him off. Plus, there are the behavioral issues: grimacing, flapping his hands vigorously, talking to himself, “off” body language, louder and louder talking, getting hung up on some minor detail and Just. Not. Letting. It. Go., flat intonation, brusqueness to the point of outright rudeness, and odd ideas about personal space. To quote from The Waterboy, ” he doesn’t have what we call *The Social Skills*”.

I learned very early that *most* of the time, my wants and preferences for things weren’t as important as my brother’s. I also learned, early and well, that because of my brother’s issues, I wasn’t given a lot of leeway for my own. I learned to concede, give in gracefully (because if he was having a meltdown, it didn’t matter that *I* was having a good time at the pool, we were leaving NOW), not display anger, disappointment, sadness, etc because it was reasonably futile. I hid my own health issues, even as a relatively young child (childhood migraines, IBS). I remember being sick in first grade, waking up in the middle of the night, throwing up in bed, not waking my parents, cleaning myself up, changing my sheets and going to school in the morning. I got sick at school, all over my math worksheet and then got grumbled at for not saying anything at home about being sick. I learned to keep my own council, handle my own affairs, not depend on having anything to myself (my brother regularly raided my room, and would use/completely dump out my shampoo and conditioner and fill the bottles with water) and not inviting friends over to spend the night or just hang out because of my brother.

I realize that my parents were doing the best they could at a time when ASD issues were not widely diagnosed/recognized. I *know* it was difficult for them, trying to find a diagnosis for my brother, hunting for help (therapy, special ed. schooling) and managing his behavior as well as they could in the 70’s and 80’s. I would see friends and relatives who were close with their siblings; they generally got along and had reasonably good relationships with them and I would wonder what that would be like. I imagine it would be nice to have someone with whom you shared a history, life experiences, good times, bad times, family jokes, etc and have someone to call on for help and support when it was needed, someone to gossip with, laugh and cry with, all that stuff.

This is the stuff nobody talks about or addresses in the verbal vomit of positivity that surrounds these issues. Heaven forbid you talk about how hard, how thankless, how maddening, gut-wrenching, isolating, and horrible it can really be, because you will get shouted down as a buzzkill. It is always a “blessing”.

Sometimes I don’t think there is enough sugar in the world to make decent lemonade out of those lemons.

J.B.

I’m so sorry for your childhood. Your needs were not remotely met and no child should have to grow up that way. High functioning autism can be deceiving as well to the extent that someone with strengths in some areas can compensate for others. And when the worest of it comes out at home others think you’re crazy or terrible for bringing it up.

I don’t think it has to be so hard but as long as empty words are given and not support (and in some cases that would be therapy, in others in home or respite care) some families will be torn apart.

RMY

Thank you for sharing that. My wife has a mother with schizoaffective disorder. She is unwilling to contribute DNA to the future generation because of it. She knows she will become her mother’s caretaker in the next few years and resents that, while she still loves her mom. It’s complicated.Parenting seems hard enough without throwing special needs in the mix.

FEDUP MD

Part of the issue is infantilization. People think developmentally delayed people are just large children, because they are thought of as “at the level of a 10 year old” or what have you. No, they are not. The have the COGNITIVE ability of that age, but all the emotional abilities of their real age (including, hormones). It’s about as frustrating as one would think. They want independence, meaningful work, sex, and a family in many cases, just as every other adult does. The problem is if they can’t have those because of their limitations, it is frustrating as it would be to anybody else.

Amy

ALL of this. As a teacher, I have had the opportunity to work with many students with a variety of disabilities. Each one is different but obviously certain conditions result in higher likelihoods of certain symptoms, medical complications, and behaviors. KNOWING what to expect allows us to adjust our practice to suit each student’s needs. Pretending nothing is wrong prevents us from helping our students reach their full potential.

Spamamander

So much this. Absolutely this.

onerose03

What bothers me is the folks who have made it their mission to crusade against the termination of children with a DS diagnosis aren’t doing it by making sure the parents and children get the support they need to make it through, but instead by trying to convince people that it’s no different from raising any other child. I don’t even think they’re necessarily doing it intentionally because as you said, many of these are women with very young children who haven’t faced all the realities themselves yet. It’s very noticeable that the rapturous “mommy blogs” stop dropping off as their children hit school age (although the few that remain are truly gems!)

They also seem to be fairly well-off families with good health insurance who can afford for a parent to stay home, who can handle the costly medical bills, and have the time and energy to fight for services and access. I don’t think they realize how many families are not equipped for that journey, and what they might really be asking someone.

Bombshellrisa

They also often completely ignore what it can mean for a marriage and for any siblings of the child. As a teenager, I watched my friend’s family disintegrate after the birth of her sister with DS. My friend couldn’t handle the constant fighting and the expectation that she would be the caregiver for her two other siblings while her parents focused on the child with DS. Things hit rock bottom when her parents divorced. She left home at 15.

FormerPhysicist

I was so scared with pregnancy #3 at 40+ years of age. Not only “what if child #3 is disabled, can I cope?” but also, “what I want for children #1 and #2 is not to be lifelong caregiver of a sibling”.

demodocus

OT: Daughter was born 2 days ago. She’s 8 lbs, 11 oz and 18 inches long and my ob says we need to stop over his office when we bring her for her ped’s visit next week, lol. That guy adores babies.

Who?

That is my kind of OT!!

Congratulations from a distant internet stranger who seems to have some dust in her eye….

Be kind to yourself and enjoy this special time.

Amazed

Congrats! Welcome, little demigoddess!

guest

Congrats!

Bombshellrisa

This is wonderful news! Hugs!

LaMont

Congratulations!! And heck yeah I’d hope the ob loves babies! 🙂

Megan

Actually the OB who did my CS is terrified of babies, won’t hold them aside from catching/extracting. He’s a fantastic surgeon though!

LaMont

Oh wow, an OB terrified of babies sounds like a brilliant sitcom premise, or at least an SNL bit!

Megan

Kind of like Doc Martin on PBS, a surgeon afraid of blood.

Box of Salt

Welcome Baby Girl and Congratulations to the whole family!

Monkey Professor for a Head

Congratulations!

Inmara

Congratulations! Such a great news!

Dr Kitty

Congrats!
I hope your son has taken to his sister and that you’re getting lots of rest!

demodocus

Actually, he hasn’t met her yet. I didn’t mention it because she is fine, and they thought she probably would be but wanted to be cautious, but she’s been in the NICU. She apparently had a bit of trouble transitioning to breathing air, but they put her on 48 hours of antibiotics to make sure she didn’t have an infection or something. She’s off everything now and probably could have come home yesterday evening except that we have to wait so DH and I can take the mandatory leaving NICU class today. Sibs under 3 are not allowed in the NICU, so the boy has to wait, too.

demodocus

also, i’m babbling. Sorry

Dr Kitty

I’m glad to hear she’s doing better, I’m sure your son will adapt beautifully to being a big brother.

NICU stays are always stressful, even at the milder end of things. Look after yourself, rest while you can and enjoy your little lady!

Mishimoo

Awww! That would have been a bit of a shock for you and rather stressful. I’m so glad she’s fine and that the doctors were cautious.

Erin

I know I moan about the NHS but what on earth do they teach you in a “leaving NICU” class?

Glad she’s okay and hope the sibling meeting goes brilliantly (and that she doesn’t vomit on him as an opening move like my youngest nephew onto his brother’s favourite shirt. Apparently that doesn’t promote sibling harmony).

demodocus

I’ll find out in a few hours. And no, spit up doesn’t, but that girl’s belches might!

Welcome to baby demodocus! Best wishes to all and to all a good sleep, feeding, and rest.

Lilly de Lure

Congratulations!

Megan

Just saw this. Congrats!!! So happy for you! Enjoy the snuggles!

Charybdis

Congratulations! All hail the Little Lady!

Gene

BIG girl!! I sometimes wish we had a closed private group where we could share pics of our cuties…

Azuran

Congratulations!!! ^^

Montserrat Blanco

Congratulations!!! And I hope you recover well and soon.

momofone

Congratulations!!!

Deborah

Wonderful news! Congratulations x

Sue

Congrats to you and family!

moto_librarian

Congratulations!

Amazed

OK, someone help me out please: Is it me, or did this woman want to hear that all would be fine and Down syndrome is no biggie so she should enjoy her pregnancy? Is it another “variation of normal”?

Box of Salt

Amazed “did this woman want to hear that all would be fine and Down syndrome is no biggie”

No, she wanted to hear: Your Baby Is Perfect.

Lilly de Lure

To be fair I can understand this – I’d love to hear the same thing (although I’d infinitely prefer to hear “no your son doesn’t have DS” when he’s born) on an emotional level, but it won’t do either of us any favours if he does have it and I need to deal with things as they actually are rather than as people would like them to be.

Having said that I can understand her annoyance at this doctor’s saying that she “should” abort the baby. The decision to terminate a pregnancy under these circumstances a difficult judgement call that’s going to involve all kind of factors for each parent and given that I can’t see the justification for advocating, as a doctor, one particular decision (this isn’t a clear cut case when one decision is clearly in the best interests of the child/mother – it’s not a “look at me I’m 47, with blood pressure through the roof and a history of 3 c-sections – how dare you say a word against my home birth” situation.)

Surely giving information (which I have much less sympathy with her being angry about getting) and then supporting which ever course of action the parent decides would be the better course of action for the doctor here.

Gene

But did the doctor actually recommend termination or merely offer it as one potential option? I rarely deal with this issue given my specialty, but I have in the past (used to want to be a medical geneticist before I came to my senses). For some people, even bringing up termination is no different than hog tying a pregnant woman and forcing her into stirrups for a D&C.

The closest I can come to (regularly) is when I diagnose a pregnancy in a teen. Plenty of times, the pregnancy is desired and a happy diagnosis (even if she is 13 – don’t ask). But sometimes it’s an “oh shit” moment. I give referrals to OB for everyone, but also sometimes give contact info for Planned Parenthood as well.

One girl had a medical condition that would make continuing her pregnancy lethal unless she made very drastic changes. She didn’t want to be pregnant, but abortion was against her belief system. Because I don’t have much of a filter (surprise surprise), I told her that she needed to make a choice: either terminate, take the recommended meds (that may hurt fetus), or die herself (and likely fetus as well). Doing nothing was tantamount to suicide. Did I encourage her to terminate? No. But I (and several specialists were VERY clear regarding potential outcomes.

Lilly de Lure

Oh yeah, I get that, certainly if the woman interprets the Doctor merely mentioning the dreaded A-word as a virtual order to terminate then any vestige of a genuine point she may have had goes up in smoke in my eyes.

I totally agree that women carrying DS foetuses (foetii?) should be made aware that an abortion among their options during the diagnostic discussion, I was just thinking that if she is reporting accurately that the doctor tried to steer her in that (or any) specific direction after giving her the facts that would have been as wrong as painting the fluffy joy joy, Downs Syndrome is no big deal picture for her that she seemed to have been demanding.

Gene

I completely agree with you. But barring a case where continuing the pregnancy will result in certain death to the mother, I’ve never heard of a doctor actively encouraging termination.

guest

All my surgeons told me at birth was “5 pounds.” Hours later I had to cry to get anyone to give me a further update. I didn’t expect anyone to be able to immediately tell me what my premature son’s issues were, but being told nothing at all sucks balls.

Sonia

This seems to have something in common with yesterday’s post. The magical thinking that if you don’t know it’s possible to not produce enough breast milk is like the magical thinking that if you don’t test for Downs, your baby won’t have it.

Roadstergal

Or if you don’t tell someone how bad Downs can be, it’ll magically be Not That Bad.

Who?

Or that if you just believe hard enough, your breech baby, or twins, will be born right as rain in a blow up pool on the living room carpet, to the sounds of dolphins singing.

guest

I would be annoyed AF if anything was making this noise in the room while I was in labor.

I’ve worked with DS individuals. The one I actually cared for sometimes wasn’t a mild intellectual disability. He was not able to talk, his growth was very stunted, he was in and out of the hospital all the time, he had to be cared for 24/7 in a nursing home for the disabled. He had a morbid fear of white coats so every trip to the hospital was pretty traumatic for him. He couldn’t tell us all the pain he was feeling or where it hurt so much of his time was spent beating his head against the wall. I cared very much for him, but I know I wouldn’t want that for my own child. He passed away at around 30 years old. I am not sure what I would do if a child was very likely to have DS, but I would definitely want to know.

I feel like most likely the doctor didn’t say she should terminate, I think he probably outlined just how difficult it could be and how sick her child could really be so to really think about it. As far as I know, they can’t really tell how badly your child will be affected.

Roadstergal

He probably offered termination as an option…

I read a rather poignant article in college about a woman who worked with Downs children and chose to abort when the fetus was diagnosed, given what she had seen.

Heidi

Yep.

StephanieA

I don’t work with disabled children or adults, but our close family friends have a son with DS. It is not something I would choose for my family. I haven’t been in the position, but I would probably terminate.

Deborah

In a church I belonged to a few years ago there was a delightful adolescent girl with Downs. She sang loudly, was very outspoken with her opinions, often praying extemporaneously during the service. Her favourite dance move was the belly dance which she performed with great enthusiasm to songs with messages about the sinful human condition!
I know that raising her was very difficult for her mother though and she was often in a quandary about how much freedom and independence her daughter was capable of. The mild degree of the syndrome meant that she was more vulnerable to exploitation compared to if she had been severely affected requiring long term care.

Amy

And in my experience, I’d call that a middle-of-the-road prognosis. Everybody forgets about all the babies who have Down syndrome who don’t make it to age two because of the high likelihood of heart defects. I’m not that old, and I’ve known four families who had a baby die within the first year of life due to heart complications from Down syndrome.

Hannah

My first ever exposure to Downs was when I was 8, we had just moved into a new area, and four months later I went around to sell girl scout cookies. I don’t remember most people that I spoke to then, but I still vividly remember the dad at one home open the door visibly crying because their infant son had just died of complications from Downs. Needless to say, my mom was horrified that we had interrupted their mourning and made apologies and condolences, but I still think of that when people bring up how ‘perfect’ babies with downs are.

BeatriceC

If I were an OB I think I’d rather risk offending a patient by telling her that abortion is an option than cause harm by not telling a patient who would not be in a position to take care of a special needs child. Taking care of special needs children is a lot of work. I know this first hand, and my kids are pretty “mild” in comparison to a lot of other types of disabilities. I agree with all the others who say that this woman has an agenda and seriously doubt her version of the story.

Yeah, I find her outrage at the doctor’s description of an abortion as a possibility to be misplaced. I’ve spent a great deal of time around people with disabilities and would likely keep a baby who had DS – but my freedom to do that is based in the freedom of another woman to have an abortion.

The tone reminded me of a small subset of Catholic girls I went to HS and college with. These girls had the insane position that a doctor asking them if they needed or wanted birth control options meant that the doctor wasn’t respecting their choice to abstain from sex until they married. No, the doctor was doing her job and an adult woman would be able to see that. (I annoyed the hell out of those girls because I would explain that a) I was planning on waiting until I was married to have sex and b) having a doctor ask me if I needed BC was just good medical practice since I wasn’t waiting to have sex out of a fear of pregnancy or STDs but as a religious practice. Right? Or did I miss a memo somewhere?)

Roadstergal

I went to a small Catholic school for a year, 8th grade. One of my classmates there had already had 2 abortions by the time she hit that grade level.

That doesn’t surprise me, unfortunately. My Catholic HS taught how to use BC by pretending the information was needed “so we didn’t accidently use artificial contraception.” (I’m not doing the teacher’s facial expression or voice justice. He might have as well said “Look, something like 95% of you will use this eventually and some of you need it RIGHT NOW.)

I’ve never thought withholding information is a good way to promote an ideology.

Dr Kitty

When I told the MW at our booking appointment at 11 weeks that I had a history of spina bifida so I really wanted her to check the skull she said “oh they’ll do that at the 20 week scan” , and my response of “sure, but I wouldn’t want to continue an anencephalic pregnancy that far” was not exactly met with support, so much as a horrified look.

Mattie

honestly, I think I’d have probably just told the sonographer at the 12 week scan and bypassed the potential judgement, midwives can be very judgey

Dr Kitty

In this Trust it is MWs doing the initial scan.
Not sonographers.
Which is adequate, if all you are using the scan for is to count how many babies and date the pregnancy, which is all they usually do.

Mattie

Oh that’s interesting, cool, that makes more sense then 🙂

EmbraceYourInnerCrone

What is wrong with people? It’s your child, your body, your relationships and, you and your family’s decision. You need the facts and possible outcomes(all of them) so you can make the best decision for yourself. Why is it so hard for people to understand this? What is the right decision for someone else may not be the right decision for me, my partner, my other children or other dependents I may have that rely on my time and income.

Erin

As someone who asked the Midwife if regardless of the numbers that came back from my Quad blood test, could I have an amniocentesis if I chose, I suspect I’ve seen a very similar “horrified” look.

Mattie

out of interest, can you?

Erin

According to the Consultant she emailed, absolutely. In the end we weighed up all the evidence we had, quad results of 1 in 3200 ish (at age 37), no sign of any issues at the first scan and decided against it but in our Trust at least, they would do it regardless.

From the way in which the Consultant worded the email though, I suspect it’s not a question most people ask.

Mattie

That makes me happy, sorry your midwife was a bit :O though, not her place to judge, at all

Valerie

Did she expect every mother to continue an anencephalic pregnancy to the bitter end? Please tell me this isn’t the norm.

Dr Kitty

Northern Ireland- where foetal abnormality is not considered grounds for a legal abortion unless you can also show continuing the pregnancy poses a real and substantial risk of permanent physical or psychological damage to the woman.
I’d have preferred to travel to England and terminate an affected pregnancy as early as possible, on grounds of cost as well as everything else.

The Belfast Trust doesn’t even offer quad screening or NT measurement, on the basis that it makes clinicians uncomfortable offering screening tests when they can’t offer a legal termination.

If you want quad screening or harmony screening and you are booked to deliver in a Belfast Trust hospital you have to pay for it privately.
They’ll do amino or CVS if you are very high risk or have a previously affected pregnancy, but not quad screening.

If I was to have another pregnancy, despite having had both my babies in a Belfast Trust hospital, I’d move to the Ulster hospital (different trust, same distance from my house) specifically because I’d be over 35 and would want quad screening, which the South Eastern Trust will do.

I could write a book about the shenanigans here surrounding abortion.

Mattie

I forgot you’re in Ireland, I really hope they (to put it bluntly) sort that shit out soon, it’s a travesty 🙁

Dr Kitty

What used to happen in Northern Ireland when it came to foetal abnormality cases was that if a woman wished to terminate, two obstetricians would quietly agree that continuing such a pregnancy would put her at risk of severe and permanent emotional injury, and the pregnancy would be terminated- usually by induction of labour. This would then be coded as “early induction of labour on medical grounds”.
It was hush-hush, but it was happening, and women at least had options.

THEN hospitals in NI had to release figures on terminations, and it became clear that about 300-400 a year were happening, and that most were for foetal abnormality. This obviously was felt to be too high by someone…

About 5 years ago the department of Justice released draft guidelines on abortion, which made it clear that foetal abnormality *alone* was not grounds for a legal abortion, and that medical staff faced imprisonment for performing abortions. This has had a chilling effect on the situation, with staff feeling very much that their hands are tied, even if they want to help.

I am aware of occasions where being forced to continue an affected pregnancy has caused a woman to have an emotional breakdown, and then the pregnancy was terminated on the grounds that continuing it posed a risk to her health.

Our Attorney General is very famously pro-life, and the first draft of the abortion guidelines referred to “the unborn baby” throughout, so yes, there was a definite agenda.

A judge has already found that not allowing abortion for FATAL foetal abnormality (such as anencephaly or Potter’s syndrome) or in cases of rape or incest is a violation of the human rights of the women involved…but has stopped short of demanding that our politicians remedy this by changing the law.

I wasn’t exactly a fan of what used to happen because I think it should have been out in the open and legal, but at least it was better for women than what we have now, which is a climate of fear and suspicion.

Mattie

and it undeniably leads to ‘backstreet’ abortions, which honestly is what abortions using pills purchased online are because you never ‘really’ know what you’re getting.

Out of curiosity, what do women who want terminations in Ireland do? Do they travel somewhere where it is legal? Or is it common for women to see out illegal abortions?

J.

They travel to England if they’re well enough. If the woman is not well enough to travel, she dies along with the fetus.

Guest

Yes, I recall the case of the woman who died when she was repeatedly denied a termination of a non viable pregnancy. Horrific. But I was more inquiring about elective, non emergent terminations. What would a woman do who doesn’t have $ for travel? Like some states in the US where regulations have all but completely closed all clinics.

Dr Kitty

Continue the pregnancy.

Or order something dodgy off an online pharmacy and hope for the best.

Or got to womenhelp.org or womenonweb.org, who provide genuine drugs and some safety netting.

Or scrimp and save for weeks and weeks to save up enough to eventually travel- this is why Northern Irish and Irish women typically terminate later than women in England, Scotland and Wales.

Or take some of their daddy’s Arthrotec (misoprostol and diclofenac) from the medicine cabinet in the bathroom, take too much, over several days, and end up in hospital with a perforated duodenal ulcer and a septic abortion.

Dr Kitty

Northern Ireland is not the Republic of Ireland.
About 50 terminations a year are done in Northern Ireland on medical grounds.
Legally the pregnancy has to present a “real and substantial risk of causing permanent and severe damage to the woman’s physical or mental health”.

In the Republic of Ireland, because their constitution enshrines that a foetus and a woman have an equal right to life, the woman’s life has to be in imminent danger before she can have an abortion…but she can still have an abortion to save her life.

Savita showed that the laws are not always interpreted well, but don’t misrepresent them please.

Dr Kitty

If you have the money and can spare the time away from home (typically about £2000 to include the procedure, hotels, flights etc) you can travel to England, Spain or the Netherlands and access an abortion there.

If that isn’t an option, women are increasingly using online pharmacies to access misoprostol and mifepristone in order to induce miscarriages. This is illegal, and a woman recently received a suspended jail sentence precisely because she did that.

Medical staff are supposed to report to the police if they suspect someone has illegally terminated, which means that there is an unofficial “don’t ask, don’t tell” policy around women appearing at early pregnancy clinics and Emergency departments with incomplete miscarriages following attempted illegal medical terminations.

I wish you would write that book. Things in the U.S. are getting worse as well, with two states now having eliminated fetal abnormalities as a permissible reason for abortion. Not to mention all of the 20-week bans (including in my state), which seem engineered to prevent people from terminating based on the anatomy scan.

Amazed

Terrible. Not surprising, though. Poor Savita’s case comes to mind.

Ceridwen

I got the MaterniT21 test with my second pregnancy but still wanted a scan at ~11 weeks to check the skull for ancephaly and it was like I was asking for the most absurd thing ever. The only person who even seemed to understand what I wanted was the ultrasound tech.

SporkParade

Best part of being pregnant in a non-Christian country: We have two anatomy scans, the first one being offered at 14-16 weeks, solely on the basis that they can detect about 3/4 of detectable major defects before the window on D&C termination closes.

Lilly de Lure

I’m in the UK and we have a similar situation here, but a little earlier – one scan at 12 weeks and one at 20 (spina bifida and anenocephaly being two of the major things they look for at the 12 week scan – that and they do the NS thickness/blood test for Downs). Both scans are deliberately timed so that if they spot anything you have time to arrange a D&C abortion prior to the legal cut off if you wish to.

Dr Kitty

No, actually, the timing of the scans in the UK is nothing to do with the legal situation about termination.

In GB (England, Wales, Scotland) under the terms of the 1967 abortion act foetal abnormality, along with life and health of the mother, are grounds for termination and the 24week limit doesn’t apply.

The specific wording is this:

“Subject to the provisions of this section, a person shall not be guilty of an offence under the law relating to abortion when a pregnancy is terminated by a registered medical practitioner if two registered medical practitioners are of the opinion, formed in good faith—

(a) that the pregnancy has not exceeded its twenty-fourth week and that the continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant woman or any existing children of her family; or

(b) that the termination is necessary to prevent grave permanent injury to the physical or mental health of the pregnant woman; or

(c)that the continuance of the pregnancy would involve risk to the life of the pregnant woman, greater than if the pregnancy were terminated; or

(d)that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.”

Most pregnancies are terminated on grounds a), and the 24 week limit applies.

b) is health of the woman and has no time limit,
c) is life of the woman and has no time limit
and d) is foetal abnormality and has no time limit.

HOWEVER-
Abortions after 24 weeks are only performed in NHS hospitals, not private clinics.

Which means that a Northern Irish woman who receives a devastating diagnosis at her “big scan (usually 20-22 weeks) has two weeks to get several thousand pounds together and travel to a private clinic for a termination, because she can’t access an abortion in an English NHS hospital after 24 weeks, even if LEGALLY her pregnancy meets the criteria for one.

The same applies to Northern Irish women who wish to terminate on grounds a), who have co-existing medical conditions which don’t meet the criteria of b) or c) or give them legal grounds for a termination in Northern Ireland, but which make them medically unsuitable for termination in a private abortion clinic.

I find that shockingly unjust.

Like I said, I could write a book.

Dr Kitty

You’ll see the the wording of the law essentially allow abortion on demand under section a). A termination before 24 weeks is statistically less risky than continuing a pregnancy to term, so ALL pregnancies meet that criteria.

Inmara

Wait, did I read that correctly? The letter writer’s friend had an information about her baby’s Down syndrome withheld from her? Is it even legal, if there were something to be seen in ultrasound?

Mattie

No, I thought that at first, it says ‘specialist’ so I would imagine that the baby had already been diagnosed and they were then referred to a maternal/fetal medicine specialist

LibrarianSarah

As a pro-choice, disability rights advocate that story gave me all the squicks and put me in a compromising position ethically. One one hand, I know that at the end of the day that the decision on whether or not to continue a pregnancy is up to the the pregnant women and any physician that withholds information in order to influence the decision one way or the other qualifies as the biggest douche in the universe.

On the other hand, I also know that if their was an in utero test for autism in the 80s I wouldn’t be here right now and that would be a shame. Not for me mind you, but for my friends and family. Because at the end of the day, when a women makes a decision to have an abortion she is always is doing it with partial information.

If that hypothetical test for autism existed all my mother would know was that she is carrying a fetus with autism. She wouldn’t know that said fetus would grow up to be a charming but quirkey librarian that was great a school despite being terrible at nearly everything else. That likes learning about world history, critical thinking and making people laugh. She wouldn’t know that I although I would never be “independent,” I will still be okay. She could never know that because it wouldn’t have happened yet.

That is why we have to change the way we think, talk about and treat people with disabilities. Instead of seeing those with disabilities as burdens or sources of inspiration, see them as complete human beings that sometimes need assistance with things that others do not. We should structure society so that those who need assistance or accommodations can get them easily and everyone could have the opportunity to be okay.

OttawaAlison

I wouldn’t abort for autism, that would have been pretty much at least half my immediate family. That said not all disabilities are equal and I think it knowing certain information to make a choice is essential. None of this stuff is black and white.
For me having much higher than average chance of death in infancy would have me terminating as soon as I had known the results (hypothetically speaking) because I just cannot go through another full-term pregnancy again to have a baby die. That is my choice. I have seen and lived through the outcome of “deceased child”, I don’t want to go through it again.

LibrarianSarah

I don’t judge you in the least if you were to have an abortion because your child was going to die. In fact, I wouldn’t judge you in the least if you decided to have an abortion for autism either. You have every legal and moral right to have an abortion for whatever reason.

What gets me is that a lot of only talk about the difficulties faced by people with DD and ID (but more often it is about their “caretakers”) in the context or either abortion or when a person who “cares for” a DD or ID individual kills them. Afterwards, nothing changes. No one examines our cultural prejudices. No one try’s to fix our social safety net. It’s like gun violence in a way.

That’s a very apt analogy. Lots of handwringing, no real action, rinse and repeat.

Valerie

Here is how I think of it: There are never any guarantees about the future with any decision, including abortion. I had three older siblings, two of whom were terminated by the cruelties of nature, and one because my parents didn’t feel they were ready to raise a child. They looked at the information they had- just started dating, not a stable time career-wise, etc, and thought their quality of life would be better without that child. Maybe things would have worked out beautifully and happily for my young parents. Maybe not. In either case, I likely wouldn’t be here, had they chosen a different path. The decision about aborting a child with Down Syndrome has it’s own additional uncertainties, but I imagine parents think about the same factors- what will our family life be like if we continue or abort this pregnancy? There is a risk of that child experiencing serious medical complications, up to and including death. Or, that child may also grow into a wonderful person who needs some assistance or none at all. Ideally, the commitment on the part of the parents would be nearly the same should a child have a disability, with social programs providing additional support where needed, but in reality, caring for a child or adult with a severe intellectual disability can be an immense, ongoing source of stress. For example, people can end up losing their jobs because they cannot find childcare that meets their child’s needs.

I guess what I’m saying is that it comes down to parents trying to make the best decisions for themselves and their families, whether the fetus has a known disability or not. The risk of aborting an awesome person who just needs some assistance is one they have the right to take, just like anybody else deciding to terminate a healthy pregnancy because of their life circumstances.

LibrarianSarah

but in reality, caring for a child or adult with a severe intellectual
disability can be an immense, ongoing source of stress. For example,
people can end up losing their jobs because they cannot find childcare
that meets their child’s needs.

And THAT’S the problem! THAT is what we should be talking about! But that doesn’t get discussed. Instead for about 48 hours everyone on Facebook is going to pretend to be offended that a doctor recommended an abortion and then vote to cut whatever is left of the social safety net and call the next person who annoys them a “retard.”

These people are using the intellectual disabled as a sword to fight abortion, doctors etc and doing nothing to the larger systemic problem that those with ID or DD face.

Valerie

I couldn’t agree more.

The Computer Ate My Nym

I agree. But here’s my problem: I wouldn’t willingly force my child to face that society. I’m tired of it myself. I’m not sure I wouldn’t have aborted a fetus that was estimated to be as affected as me not because I don’t think that fetus has a chance of a decent life but because I don’t think society’s ready to give it a chance.

Then again, I’m 10-20 years older than you. Maybe school in the late 1980s-1990s-much less the 2000s-wasn’t as bad as in the 1970s and early 1980s.

guest

My problem with it is that often times a disabled family member IS a burden. Okay, so we could address that and relieve the families of the load. But demanding that they stop seeing or naming the very real burden that currently exists isn’t fair.

Yeah. There’s been some discussion on tumblr about this – if only I could find it right now.

attitude devant

Spare me. Seriously. She’s allowed to have her values and ultimately to have her choices were supported. Which they were. But she did indeed have testing and her doctor was obligated to share with her the full spectrum of issues that Down Syndrome can present from fatal congenital heart disease, to feeding issues, to developmental and cognitive delays. Not every parent is up to parenting a child with these problems. I’m glad her situation has been so positive. (But not so positive that she didn’t have the urge to whine about her doctor doing the right thing…)

fiftyfifty1

Yes, reading the mother’s whole letter, it’s clear that her agenda is to stop abortion. If it were just that she had already made up her mind about continuing her pregnancy and that she believed her doctor should have acted more optimistic once her decision was made, that would have been one thing. But she wants docs to be telling mothers that their babies are “perfect” and is praying that their hearts will be changed by God, and saying they should be in awe of the little lives that they see on the ultrasounds. Obviously this is not about bedside manner or communication, it’s about her religious beliefs.

LaMont

Surely one is not required to get the test for Down’s Syndrome? I’ve definitely heard from mothers who knew they wouldn’t terminate that they declined the test because the small risk for *no usable information* wasn’t worth it to them. If you’re seeking out the information that implies you’re going to use the information somehow (not necessarily to terminate, but to plan/figure/whatever, and still seems like you’d need to know the options).

Mattie

yup, the test can be declined, I agree that accepting it suggests you’ll ‘use’ the knowledge somehow, personally I’d wish to know so I could make an informed decision

LaMont

Oh I definitely think that any position of “I definitely want to carry to term regardless of these genetic concerns” or “I definitely need to know before deciding” or “I definitely need to know because certain issues are definite termination scenarios” are all legitimate, and doctors should seek to find out which category their patients are in and act accordingly. Patients who expect their doctors to instinctively know where they stand… oy.

TheArtistFormerlyKnownAsYoya

You are allowed to refuse it in Canada and in fact they don’t even offer it unless you’re over 35.

Puffin

They do offer prenatal chromosomal abnormality screening to women under 35; which exact screening they offer, funding for NIPT, and what constitutes ‘screen positive’risk varies a bit province to province, but as far as I’m aware all provinces cover at least some form of prenatal screening for trisomies for all women. I’ve had it with all of my pregnancies that made it far enough, at ages 19, 23, and now 29.

TheArtistFormerlyKnownAsYoya

Did they offer it to you or did you have to ask? I was under the impression you would have to request it under 35 but it would still be covered. I’m having my first at 37 so haven’t been through the process until after 35.

Puffin

It was offered. I’m a medical student, interested in going into OB/Gyn, and when we covered prenatal screening there was no talk at all about only offering it to women over 35. It’s actually a standard box on the provincial antenatal record (most provinces have some form of standard record like this), right under the immune and STI screening that is also strongly recommended.

Cartman36

You are correct, no one is required to have the genetic testing.

swbarnes2

But knowing that your kid is high risk is actionable, because you can deliver with specialists, start educating yourself on raising a kid with those issues…etc.

Mattie

Honestly I query whether those who do not wish to know are those who feel they ‘must’ keep the baby, and that would be harder knowing there was a problem. If you’re content with keeping the baby whatever then I would imagine the knowledge would be used to put things in place and as such could only be positive.

attitude devant

I often have patients tell me they want no testing because they are carrying the baby no matter what, and that’s fine, but….the last mom who said that DID have a baby with Down Syndrome and it completely bowled her over. In retrospect, she would have been much better off with some advance warning. When we have parents with a known Down Syndrome-affected fetus we talk about how they may not feed well and may need bottle feeding, and we sign the family up with a ‘buddy’ family also raising an affected child. Knowledge can be empowering.

The Bofa on the Sofa

Yep. We had screening because we were AMA. Not because we would ever terminate, but in order to access resources and a support network

That is the reason my husband and I plan on getting all information possible. I don’t think I would terminate a pregnancy, but I would really benefit from advanced knowledge.

I had family friends who had a daughter who was diagnosed prenatally with Trisomy 13. They chose to continue the pregnancy and were simply hoping that their daughter would be born alive. She was and actually lived 50 days in hospice care. A’s life was short, sweet and heart-breaking. I can’t imagine how much worse it would have been for her parents if they had been expecting a healthy baby instead of a terminally ill baby.

swbarnes2

I can imagine if you had a fetus with a fatal defect, and refused to consider abortion, the rest of pregnancy would be pretty dreadful, while if you were ignorant, it would be awful for a much shorter amount of time. I can’t imagine walking around for months, expecting the fetus to die at any moment, wishing it would happen sooner, just to be over with. How I would feel if I was physically miserable for a baby that was barely going to have a life.

But given how many babies have better outcomes when their parents know their health issues in advance? I can’t see how a responsible parent denies their kid that.

attitude devant

There is sooooo much to think about. Suppose your baby has an abnormality (such as certain heart defects) that needs to be surgically corrected RIGHT AFTER birth to give the baby the best chance? No testing, missed opportunity. Suppose your baby has anomalies not compatible with life and you don’t know it, but while in labor the FHRT looks weird so you have an urgent C/S…..for a baby that won’t make it? These are non-trivial issues, and parents refusing any testing miss out on real opportunities to make informed choices.

Mattie

This assumes though that parents who refuse screening or genetic testing would also refuse other prenatal care like scans that could pick up other medical requirements. The genetic tests might pick up the Down’s Syndrome but they wouldn’t pick up physical abnormalities with the heart or lungs etc…

attitude devant

The problem is that the ‘other’ testing and the Down testing are not mutually exclusive. There are findings on routine ultrasound that can point toward genetic abnormalities, and genetic abnormalities that are not obvious on u/s may still lead to u/s findings like fetal growth restriction. So it’s not like you can just say, ‘no genetic tests!’ and avoid the information.

Amazed

That pretty much sums up what I told my brother when SIL was freaking out before every test because… you know. He asked me what I thought. Did people who would keep the baby anyway really need those tests? Yes, I said, they are those who absolutely need them. It isn’t about freaking out a few months more, it’s giving your baby the best chances of the healthiest outcome possible by knowing that they needed to be born at a certain place where help was available.

He said thanks, that he had never thought about this. They made all the rests recommended. And they felt better each time it was confirmed that Amazing Niece was totally fine. (Currenly, she’s expressing a great wish to talk but her tongue gets in the way, so she whimpers and laughs at the same time. Just adorable!)

I’m not sure about the first example. I mentioned above that I know a family who kept a daughter with Trisomy 13. The pregnancy was hard – but it was hard because the mom and dad were doing the work of letting go of her dreams for her daughter in real time. I remember reading a letter the mom posted to her blog about how she would get excited every time the baby kicked and would have to remember that the baby would likely die before birth.

By comparison, if she didn’t know the baby was terminal each kick would add to dreams about raising her healthy, bouncing child. The dreams are nice, but having to let go of that dream while saying hello and goodbye to the actual child…all while recovering from giving birth….yikes.

Dr Kitty

In my parents’ eyes the two good things with my sister’s death at 24hrs old from a previously undiagnosed congenital diaphragmatic hernia:

1) Not knowing beforehand, because it meant that they weren’t faced with making a choice about abortion or aggressive treatment. There were no heartbreaking choices to be made- everything was out of their hands.

2) That she didn’t survive for long, so that she didn’t suffer. She was severely oxygen deprived at birth- even had she survived the major surgery required to repair the hernia, she would have been blind, deaf and severely developmentally disabled. Not the life they wanted for her, or themselves, or us.

I thought about it a LOT- I personally would not continue a pregnancy affected by a major congenital defect with a poor chance for a good quality of life or a very limited life expectancy. Personally, I think it would be kinder to end a pregnancy quickly before there was any chance of my child experiencing pain or fear, than to have them suffer just so that I could get to hold them and have some photos.

Now, that is me, and that is a decision that does not conflict with my religious views. Other people will make different choices given the same information.
Some people really want to have the baby born alive if possible so they can have a baptism and a funeral. I understand why that is important to them, but I don’t share those beliefs.

MI Dawn

Correct. No one has to be tested. When I was practicing, we offered all the genetic testing (then) available. We also discussed – before the testing was done – what they would do with a problematic result. Some declined all testing, stating they would never terminate. Some wanted testing, with plans to terminate if the results weren’t optimal. Others wanted testing but made no decisions as to further steps until the results were known.

We did, however, require all women over 35 and those with positive genetic histories to meet with a genetics counselor. She was much better at mapping family histories and discussing risk rates!

Captain Obvious

If I am not mistaken, some states allow litigation against a physician for wrongful life. If a woman feels she wasn’t offered a termination option, she can sue her doctor to help financially raise said child.

magenta

This hits very close to home for me. A friend of mine had a child with Down’s Syndrome. Only she was not told there was a possibility that her baby would have it and the doctor knew. She was a single woman and living paycheck to paycheck, but after an accidental pregnancy decided to have the child. But she would have aborted of she knew about the Down’s Syndrome. He also had congenital heart disease which the doctor apparently also knew about and she lost two jobs because she had no support system to take care of him. He died at the age of three due to heart failure. At that point she was on welfare and unable to work due to his numerous doctors visits. She is still trying to dig herself out of the poverty level and now mourns a child that she never would have had if she had known about his medical issues and is living one step from homelessness.

Valerie

That is so sad that your friend went through that. There is so many sugar-coated, feel-good stories about people with Down Syndrome who have only mild intellectual disability and are able to live happy independent lives. Then there are children like your friend’s with severe medical complications or intellectual disabilities needing 24 hr care for their entire lives. These kids and the stories of their caregivers get swept under the rug.

Mattie

and while some things will show up prenatally on scans, some don’t and I think a lot of people are happy to accept a child with down’s syndrome if it’s mild, few consider the implications of having a severely disabled child when considering options 🙁

magenta

Exactly. Down’s Syndrome children are more prone to a whole host of other medical issues besides the heart disease. There are people out there who simply do not have the resources to give a child such care.

BeatriceC

There was a South Florida pediatrician who passed away recently who adopted something like 16 kids with Down’s Syndrome. The kids were mostly given up by parents who simply couldn’t keep them due to economic circumstances. He and his wife also ran a home for adults with DS who’s caregivers could no longer care for them due to death or disability. Not all kids wind up with fairy tale stories though. Those 16 kids found a wonderful home, but what about all the others who’s parents are struggling just to keep a roof over their heads, like magenta’s friend?

MI Dawn

Wow! He and his wife were very wonderful people to help out that many children and adults.

BeatriceC

He really was amazing. He was my pediatrician when I was a kid and then I took my kids to him until I moved out of the area. When my kids were little and sick, he actually gave me his home and cell phone numbers so I wouldn’t have to go through his answering service if I had a middle of the night emergency. He was an all around amazing guy.

Puffin

We’re facing something similar ourselves. Our oldest has autism. he is ‘high functioning’ but has significant difficulty in the school environment and so we get called a LOT. The older he gets the less willing schools are to cope with any difficulty from him. This makes working very difficult. We’ve had to make the decision that my husband will be a SAHD after this kid is born because we’re at the point where our son’s needs basically require a parent at home since employers do not tolerate this constant in/out. It means no income for a full year, from the end of my husband’s pat leave until I start residency, and living completely off of my line of credit and student aid, but we’ll finally have that constant panic of my husband losing his job off of our heads.

Fleur

Yes. I’m always wary of talking about this because I really don’t want to hurt anyone’s feelings, but I have a cousin with Down Syndrome and I’m aware that it’s been a long, hard road for her family, notwithstanding that she has a relatively mild learning difficulty and no other health issues. I’m glad that she was born because she enriches other people’s lives and (far more importantly) has a great quality of life herself, but I also know that the price of helping her to achieve the best quality of life possible was that her siblings ended up completely neglected (packed off to boarding school aged 7) and are now very dysfunctional adults. In a fair world, of course, there would have been better support available for my aunt and uncle but we live in an unfair world where resources are being cut as we speak. This is why I strongly believe that it’s for the parents themselves to make an honest decision as to whether they would be able to cope as caregivers, and why I believe that they should not be judged whatever decision they make.

It’s a sensitive topic but I also agree that there’s a lot of sugary sentimentality in the way kids with Down Syndrome are portrayed in the media. I adore my cousin because she’s a messy, flawed, complex person like the rest of us – creative, a gifted sportswoman, warm-hearted, sometimes selfish, sometimes hot-tempered, very driven and passionate about her hobbies. She’s not one of God’s special little people on earth, God does not look out of her eyes and I actually feel that it diminishes her to try to reduce her to some kind of innocent angel on earth. Nor does she have a divine, unconditional love for the people around her (I’m pretty sure she regards her father as a complete prat, which reflects very well on her judgement because he is).

LibrarianSarah

That doctor should have lost his license. It is severely unethical to withhold information like that from a patient.

It also says something about how shitty our society is that parents go bankrupt trying to care for the basic healthcare needs of their children. Your friend and her son both deserved better.

magenta

The healthcare itself was covered by MediCal. It was having to care for her child because no daycare took kids with such severe special needs. That she could not get a job with flexibility or pay for the few caretakers that could care for her child. No childcare = no ability to work.

J.B.

That is terrible. The cost of care unfortunately has to be part of the consideration for a special needs child, because you’re on your own once any child is born.

Cody

Ummmm, yes. I’ll be honest, the lack of sensitivity to this sort of thing is the reason that I am a doula. Some nurses could use a little sensitivity training sometimes too. We all want professionals who are medically competent first and foremost, but come on! Sometimes I wonder where the human part of them went.

I think the best approach is kindly give sensitive information, watch for cues as to how the person might be receiving the information. Let them know that you are prepared to help them manage the situation in anyway they see fit and that there is no one way that they are supposed to feel. If they express their feelings, whether angry, sad etc. then validate how they are feeling. Get them additional support to make and carry out decisions. Get them support with the emotional side of whatever they are dealing with. Refrain from expressing your own judgement on their choices or feelings.

Mattie

I wonder often if (at least in the UK) lots of HCPs are suffering from compassion fatigue, those professions are hard and when you’re also feeling like you’re not appreciated (by patients, other staff, bosses etc…) that could have a huge impact on sensitivity 🙁

guest

I appreciate this article very much. When I was getting prenatal screening, there was no window provided for me to say I wanted to terminate. The tests were always scheduled at the end of the window, so that by the time I was actually counseled about the results, there would have been no time to schedule an abortion before 24 weeks (the window before it becomes necessary to prove threat to mother’s health in my state). I was very anxious and annoyed at the way everything was delayed. I know that aborting babies for genetic defects is becoming very unpopular, but it’s still supposed to be my choice, and I felt very strongly that I did not have the resources needed to carry to term and care for a trisomy baby, in particular.

It all worked out fine. But my hackles always go up when I read accounts of women who are outraged their doctor “pressures” them to have an abortion. I always seriously doubt they were “pressured,” given my own experience. I think they were offended by the mere suggestion of having an abortion. And it is their right not to have one, and I support that. But it was also my right to have access to timely information that allowed me to make a different choice.

This article gets it, that it’s very difficult for medical providers to satisfy both types of parent when it comes to prenatal counseling about birth defects and other problems in pregnancy. Short of doctors who *actually* pressure women to abort, or who hide information from women, we should cut them some slack here.

Cody

I think it depends on where you live. It’s also really hard to determine where that truth my lie because no one wants to talk about it. Women who have had terminations (or considered them) tend to be afraid to speak up.

guest

I’m sure it does depend on where you live, but I lived in New York City, and you’d think of all the places in the US, that would be one where my medical providers wouldn’t prevent me from choosing an abortion if I decided it was what I wanted. It wasn’t all their fault, since some of it had to do with the wait times for getting testing appointments. But that’s still not acceptable. Anyway, I think the new blood tests are far more accurate at an earlier stage now – they weren’t available when I was pregnant.

Cody

Oh I agree, it isn’t acceptable and I hope you were able to make the choices that you were happy with despite those barriers.

guest

Well, all my tests came back with good results, so in the end it was moot – and both kids are genetically fine.

guest

I made it very clear that I wanted all testing available and that we would likely terminate a pregnancy with genetic issues. The NP I saw scheduled me for the standard quad screen at 16 weeks. When it came back as a possible problem and my OB called, she asked me why I hadn’t had the MAT21 test done earlier, given my age. I told her it hadn’t been discussed and that I was very clear on my feelings about testing and wanting to know as soon as possible. By the time we found out my daughter was fine, I was 22 weeks and she had been moving for a few weeks. It was horrible. We saw a MFM and geneticist and they asked about different genetic tests we could have had before the pregnancy and did we want them now (CF being one,). I was extremely angry. I had been to a prenatal appointment before my pregnancy with my OB and had been very clear to her as well about my wishes for testing. This is in the US. Do doctor’s not know about all the testing that can be done, or do they choose not to tell patients?? It was very aggravating and if I had another pregnancy, I would be consulting Google beforehand and know all my options for testing before walking into the doctor’s office.

guest

That is very frustrating. The quad screening wasn’t available when I was pregnant unless you paid out of pocket, and I don’t know about the MAT21. If I were going to have another pregnancy, I’d go in asking to schedule those tests right at the first visit to make sure I got an early spot. And since I’m in my 40s now, I’d raise hell if they tried to stop me.

Heidi

I had a similar experience with the cystic fibrosis screening. It was well into the pregnancy and no one bothered to inform me whether or not I was carrying the gene. If I did happen to carry the gene, then we’d have to test my husband, and then we’d be looking at an amniocentesis. They didn’t take the fact I’d had the test done seriously and it was $700 thing that technically insurance paid for but not until we met our deductible so we still paid for it! In fact, they acted shocked I was even getting the test done as if cystic fibrosis is something that doesn’t ever happen. Thankfully, I was negative but they left me hanging forever. If we had a CF+ baby, though, I know I’d heavily considered termination, but I can’t say what I would have actually done.

Mattie

that’s really interesting, AFAIK in the UK women aren’t tested for CF in pregnancy, women can opt for an amnio I think? Maybe :/ but the baby is tested postnatally (heel prick test)

Heidi

That doesn’t seem so great. I know I wanted to avoid something like an amnio or CVS unless something was pointing towards a high probability. Now that I know I don’t carry the CF gene, I’ll never have to test for it again.

Right as I was pregnant, my friend’s cousin had a baby that had CF. So while I was already planning on the genetic testing, I was really, really determined to get it done.

Mattie

Just checked NHS website, and don’t think they do carrier screening unless you have family history/know someone in your family is a carrier/your partner knows they are a carrier.

EDIT: It also seems that carrier status is identified through the newborn blood screening (heel prick) so that could be why they don’t test adults routinely…most will already know.

guest

That’s awful. I got extensively screened for what I carried before trying to get pregnant, since I was doing ART. And it turned out I *am* a CF carrier. There’s no CF in the family history, so I never would have given it a thought. But knowing, I was able to pick a sperm donor who tested negative (not a guarantee, but much better odds than two known carriers).

TheArtistFormerlyKnownAsYoya

This has been a big frustration for me as well. I wanted to know ASAP if there was something wrong, because I don’t want to have to delay a termination any longer than absolutely necessary. It seemed there was no sense of urgency in the medical system to perform tests as early as possible, it seemed a very laissez faire attitude. I had to request the NIPT and even persuade my doctor a little (where I live SIPS is covered but NIPT is not) because I NEED to have the most accurate information I can get. I would rather have had NIPT as soon as it can be performed (I believe around 9 weeks) but didn’t have it until it would have been too late to do CVS, had I had a positive result from the NIPT. It was all very annoying and the impression I got was that the medical system didn’t really think trisomy would be a big deal to me and the assumption seemed to be that I would not consider terminating. Or perhaps they just don’t understand that the longer you wait to terminate, the harder it’s going to be on the parents.

Inmara

NIPT is just being introduced in my country and paid out of pocket – but I will most probably request it as early as possible next time (when we’re going to try for next baby I’ll be over 35 and husband over 40). The good thing with fucked up healthcare system in my country is that if you have money at hand, you can have many things done quick and at your request.

TheArtistFormerlyKnownAsYoya

I had to pay out of pocket as well, though I live in Canada with socialised medicine, it’s not covered here yet. My doctor said “I’ve never seen the SIPS come back clear and then have the baby have trisomy,” and I said “well, I don’t want to be your first”. I’m not comfortable with a 20% false negative rate, knowing there was something better out there. If there is a next time, I’ll definitely push for it during my first OB appointment.

Puffin

Some provinces are covering it now in certain circumstances. Ontario does for age over 40, previously affected pregnancy, or screen positive (among a couple other risk factors I can’t recall off the top of my head.)

TheArtistFormerlyKnownAsYoya

I’m in BC and was told it would be covered if I screened positive on SIPS but again, that’s a long time to wait. Second part of SIPS is at 18 weeks I believe, then to do NIPT after that, wait for a result, then possibly amnio…by then you’re at least 20 weeks or more, to me it would be positively horrific to have to terminate at that point. My sister got into a trial last year where they were covering NIPT for everyone but that ended in March in BC, I just missed it. I hope that means they have plans to cover it in the future.

guest

Other than not recognizing the acronyms NIPT and SIPS, this sounds very like what happened to me. I told my genetic counselor that I would consider abortion if my screens came back positive (I was afraid to tell her I definitely wanted one if the tests all pointed to any of the trisomies), and then everything just kept getting scheduled at the end of the screening window for each thing. It was an IVF pregnancy, so it’s not like there was any delay in getting my prenatal care started.

Amy Tuteur, MD

Dr. Amy Tuteur is an obstetrician gynecologist. She received her undergraduate degree from Harvard College in 1979 and her medical degree from Boston University School of Medicine in 1984. Dr. Tuteur is a former clinical instructor at Harvard Medical School. She left the practice of medicine to raise her four children. Her book, Push Back: Guilt in the Age of Natural Parenting (HarperCollins) was published in 2016. She can be reached at DrAmy5 at aol dot com...
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